Living with an intellectual disability: One couple’s story

living with an intellectual disabilityMarni (my sister) and Kris Jamieson have mild to moderate intellectual disabilities. They grew up in Queens, N.Y., met in their teens and married in 1993, as chronicled in the documentary film we made together, Lifestyles of the Poor and Unknown (2001). Marni still shows the film for staff training purposes at her chapter of The Arc, which serves people with intellectual and developmental disabilities. Today, Marni and Kris live in upstate New York in supportive housing with the help of The Arc. Now age 50, Marni will celebrate her Bat Mitzvah in June.

Q: What was the hardest thing about growing up with a disability?

Marni: School. When I was a lot younger, people would say I was retarded because I learn slower. And that used to make me cry. And I had my fair share of bully problems.

Kris: My speech problem. Nobody understood me, I didn’t do good with my speech teachers, it was tough to communicate.

Q: How did you get through that?

living with an intellectual disability
Marni (left) and me

Marni: It wasn’t easy. For a long time I thought everything was all my fault, that my life was just one big mistake. Luckily, I had a strong family that helped. My sister would play with me and babysit me. When I got older I realized we’re all here for one reason or another.

Kris: It sounds weird, but one time I got my teeth fixed at the dentist and that helped my speech. Also my speech teacher. She had an exercise called Brain Tease. You get both of the sides of your head to work together.

Q: What were some of the positives of having a disability?

Marni school picture

Marni: I had to go to a special school because I couldn’t go to high school like everyone else did, but it turned out to be a very nice school. I got to be an exchange student, and I got to go to Italy, which was awesome.

And I met Kris, and I was able to get married. And I wouldn’t have met my friends if I wasn’t handicapped.

Kris: It kept me out of the war — the Gulf War and Desert Storm. They don’t take people with speech problems who can’t read. And I did a cool documentary called Lifestyles of the Poor and Unknown.

Q: What is your advice for parents of children with an intellectual disability?

Marni: You have to be patient. Listen to your kids. Be there if they need a shoulder to cry on. Let them know they’re wonderful just the way they are.

Do not label them, because it hurts, and they resent it. Don’t always be negative, and say, “You can’t do this, you can’t do that.”

Don’t get upset or mad if they’re not doing well in school. Don’t scream at them if they make a mistake. Encourage them to find things they’re good at.

Q: When people heard you were getting married, how did they react?

Kris: Lots of people were happy about it. We were the first couple in [our program] to get married.

After we got in the limousine, the DJ said to Marni’s mother, “I’m crying, I don’t know why, but I’m crying.”

Marni: They were surprisingly encouraging. Everybody was happy, which was great! I wanted to get married since I was little. I started dating, I think when I was 14.

Marni & Kris in limo

Q: What misconceptions do people have about your disability?

Kris: People think handicapped people can’t do nothing. We had a handicapped president — Franklin Roosevelt — and a handicapped blind person I know wrote song books for churches.

There’s a handicapped band out called Flame — they’re excellent, and they’re all handicapped, every single one of them.

Marni: They’re absolutely wonderful — they’re our favorite band.

Q: What’s life like for you now?

Marni with her soft sculpture series, "Characters Created by My Father: A Daughter Remembers," honoring our father, who died in 2010. The series won a "People's Choice" award at a juried, statewide art exhibit.
Marni with her soft sculpture series, “Characters Created by My Father: A Daughter Remembers,” honoring our father, who died in 2010. The series won a “People’s Choice” award at a juried statewide art exhibit.

Marni: Pretty good. I am now an artist in Oneonta, New York, with a wonderful organization called The Arc Otsego. And I still do employment orientation for new employees.

Every day I go to work at the Center for Self Expression, where I can do art, or go to the library or write or play basketball. I love it there. I don’t want to do anything else.

I have a wonderful husband who I love very much. I have two sisters, one with autism, and I have two nieces and a nephew. I have a wonderful mother-in-law and father-in-law.

I live [in senior housing], and the seniors there are very nice.

Kris: Most of them.

Marni: And we have a really good clique of friends, and they’re awesome.

Kris: For the moment I’m unemployed. We have a bunch of handicapped friends in the building who we hang out with. We go on vacations together, out to eat together, hang out in the exercise room together. Our favorite hangout has to be an ice cream place called the Golden Guernsey.

The down side is that I can’t pursue my dream of being a standup comedian. And I can’t have kids of my own.

Q: What is your advice for kids with an intellectual disability today?

Kris: Have a lot of patience, don’t let people talk down to you. You can make a lot of friends if you go to a group home or join the Special Olympics. You can’t be any worse off than the people in the White House.

Marni: You’re going to have days when you cry. And that’s OK. But don’t think too far into it, because it’s like wet cement, you can’t get out of it if you go too deep.

And if people call you a retard, as angry or hurt as you’re going to be, don’t say anything bad back. Tell the teacher.

And if you’re having problems at school, like learning, you’re definitely not alone. Get a special teacher or tutor to help you.

Stay strong. Don’t bully others. If you can survive this, you’re going to be OK.

Develop your own talents. Find out if you like to write or do artwork or act or dance or sing, and stick with it. And last but not least, enjoy being different. The world would be boring if everybody was the same.

living with an intellectual disability
A bus station selfie with (L-R) Marni’s brother-in-law, niece and me.

The film about Marni and Kris is available through Filmakers Library and Sproutflix, a distributor of films featuring people with developmental and intellectual disabilities.